I Am a Walking Bruise

September 16, 2018

Some chemo drugs affect vision. Cisplatin is one of those. My peripheral vision has sucked since about week 2 of this drug, which means that I’m doing a lot of walking into walls and things and acquiring an impressive set of bruises.

Last week, I walked straight into the corner of the kitchen island with my forearm. From that one I have a nice 4″ wide bruise. I have another weird long bruise on the inside of my elbow on that same arm. I sort of remember hitting it on something, but I don’t remember what. I’ve got a bunch of new little scrapes and bruises on my legs from almost tripping over the vanity drawers in the bathroom. I dog sit for some friends once in a while. I’ve finally, I think, convinced them that I do it for me more than than them. The other night, the Stubborn One was pulling me across the sidewalk to mark something or other. I was looking at her instead of where I was going and I walked smack into a pickup truck’s mirror with my chest. I don’t see a bruise there, but I can feel one. Then, last night, as I was vacuuming upstairs after sending the pups back home, I jammed one of my toes pretty good on the vacuum cleaner. It’s a lovely shade of purple now and hurts like a son of a gun. I know there’s not much anyone can do for a bruise or a broken toe, but I’m worried. This is a lot of clumsy, even for me.

Not long after starting chemo, I learned about a coworker who was also going through breast cancer treatment. One of the things she told me was that when she was going off Taxol and onto AC chemo that she was the clumsiest she’d ever been. She’d broken more dishes in those few months than she had in 20 years of marriage. I didn’t really experience that with my neuropathy and Taxol. I am now with Cisplatin. It’s not dishes I’m breaking, but myself. This is crazy.

After a year of being on 3 different heavy duty chemo drugs, I’m starting to wonder what these chemicals doing to my body. How long with these effects last? How many and which ones will be permanent? Sadly, I won’t know about the most obvious side effects – the neuropathy, hearing issues, chemo brain, etc., for at least 3 months. But what of the ones later? One of the things I’ve had going for me this whole time is that other than cancer, I’m pretty healthy. I don’t have diabetes, heart problems, high blood pressure, chronic pain issues, or anything that will lead me to osteoporosis. The one thing I do have, and I want to do something about, is being overweight. That said, which one of these drugs will break the camel’s back, though, and cause more issues that take me back more steps than I can go forward?

Like I said… I’m worried.

 

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How Many Times a Day Do I Think About Cancer?

The short answer is a lot.

When I look in the mirror in the morning and at night and I see my silver grey hair that’s only a little more than an inch long. My hair was never super long, but it was my hair in a style and color I liked. Now I’m getting used to a different look that I didn’t choose. It doesn’t matter to me that I “rocked” being bald. I have more hats and beanies than I’ve ever owned before in my life. Long gone is the teenager who used to go to the bus with wet hair at -20 F. I now have to wear a hat of some sort in the spring and fall to keep my head warm. Some of it’s because of chemo and some because my hair’s just growing back.

There are the scars on my chest from a surgery I’d never have chosen for myself, and the perpetual numbness under my arm where a pad of 20 lymph nodes were removed. The numbness will never go away.

I feel my skin pulled taut where the radiation has burned and damaged my skin. It rears it’s ugly head when I try to stretch the arm on the tumor side of my body because a combination of surgery and radiation have forever changed the way those muscles attach and stretch.

I notice it every time I move my feet, put on shoes or walk any distance. My feet are perpetually cold, mostly feel numb or sometimes kind of tingly. It’s sort of like having slippers on inside your feet. I have similar numbness and tingling in my fingertips. Sometimes it affects my typing because I can’t feel the nubs on the keys to tell me where home row is anymore.

I am reminded that I am sick every time I try to clean my house because I don’t have the energy to keep up with it all anymore. Vacuuming leaves me exhausted, and sweeping or mopping the floors are no better. I sometimes need a break while making my bed or cleaning my shower.

I am reminded when I am winded walking up the stairs to swap the clothes from the washer to the dryer or even just walking to the mailbox.

Three or so times a day when I look in the refrigerator I am reminded that nothing tastes good anymore. And that for a little while longer, not much will taste even tolerable. Then there’s the fact that I have no appetite to speak of and am eating just to make sure my system has enough calories and protein to do all the healing it needs to do. Except when I’m taking steroids. Then I feel like Garfield around a lasagna and there is constant eating. These food swings aren’t me. They’re the disease.

I am reminded when I remember something I was going to do hours or sometimes days or weeks after I thought of it the first time. Or that I can no longer remember a list of anything in my head. I have to write everything down and set a reminder to go back and either look at it or do it.

Then there are all of the reminders on my calendar to do what used to be trivial things. Like needing to find a number or to start or finish a task. The one that bugged me most was needing to set an appointment to check my calendar at the end of the day in case I had a meeting the next morning so I’d remember to get online to attend. Otherwise I’d forget I had a standing meeting with my boss.

Every time I pick up a book or try to read, either for work or pleasure, and I have to re-read sentences over and over because I can’t keep my place on the page. Nor can I recall most of what I just read only an hour later. Then there’s not being able to follow multiple characters or plots because my memory can’t keep up.

Believe me, I’d love to forget for more than 5 minutes that I have cancer and how much it’s impacted my life over the past year. Cancer’s just not intent to let me do that. At least not yet.

 

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Playing Cards with Grand-dad

September 1, 2018

Gin Rummy with Grand-dad  Gin Rummy with Grand-dad

I was sitting on the couch, having some cereal and working up the enthusiasm to finish a few work tasks, when I decided to play a little Gin Rummy on my phone. Sometimes I think the game is built in with a module that seeks revenge when you win too many hands. Today was no different. Except for one thing. While I was playing and it was suddenly winning so many hands, something told me that it wasn’t the game in charge today. I looked up to my ceiling, and I said, “It’s you, isn’t it?”

I could picture my grandfather sitting across the table from me at my parents’ house laughing at me, his whole body shaking up and down while he laughed. My mom  taught me to play Gin Rummy and Cribbage. I remember him teaching me to play 21. When he’d come over for dinner, we’d play a few hands while she finished up with dinner and before I had to set the table. I have many fond memories of evenings like this. We did a lot of laughing.

So I played Gin and talked with him for a couple of hours. How did I know when we were done? The game that never lets you win more than a few games let me win every last hand. That’s not blind luck. That’s divine intervention.

Love you, Grand-dad!!

 

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Done with Chemo – Again

August 24, 2018

I finished my last dose of Cisplatin the day after I finished radiation. I had 50% dose of this drug because the side effects were getting to be too much. The neuropathy was bad enough that my feet were nearly completely numb, and the numbness was moving down my fingers toward my wrists, rather than being just in my fingertips. My ears are ringing like crazy. Most of the time I don’t notice it, but when I do, it’s deafening. Thankfully, there wasn’t much nausea with this chemo. I had a little at the very beginning and only once did I need to use the Reglan. Its side effects sounded worse than the chemo itself. Zofran took care of any other nausea I had. The worst effect, aside from making me tired, I think is the toll it took on my taste buds. Food will take a long time to taste even close to decent again.

So now… we wait. The next scans will probably be the end of November or beginning of December. It will take that long for the radiation effects to be complete and the inflammation from both the chemo and the radiation to dissipate so that they can tell if all of this worked. In the meantime, I will continue to get my targeted therapy (Herceptin and Perjeta) every 3 weeks. They are the drugs that are supposed to find and kill any new disease.

 

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Cisplatin – Week 6

August 23, 2018

Today is my last dose of Cisplatin. I am glad to be finished with it. The side effects are more difficult to manage than the AC and Taxol, and some of them more intense.

After a long discussion with the Oncologist about whether to give the final dose or not due to the side effects being so impactful, it was decided between the three of us (2 oncologists and myself) to go ahead with a reduced dose.

I’ve been getting extra IV fluids to ensure that I’m hydrated enough not to fry my kidneys with this drug. I will continue to do so in the coming weeks as my appetite and ability to eat and drink well enough return. I expect this to take at least a month.

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What to Eat – Angel Food Cake w/Berries

Betty Crocker Confetti Angel Food Cake MixSince starting chemo 9 months ago, sweets have been my biggest challenge. Not because I can’t stay away from them. Quite the contrary. Prepping for the first PET and bone scans meant that I had to eat a very limited, high protein diet for about 2 weeks before the scans. No caffeine, no sugar, no carbs. I’d wanted, before finding out I had cancer, to make healthier eating choices. As it turned out, staying away from sugar was easier than I thought once I started chemo. I don’t know how much of it was being away from it for a while, and how much was the chemo, but most sweet things became overly rich and sweet, which made them easier to avoid. There were a few candies that I could stand – ginger chews, Hi-Chews, Starburst, and gummy bears. Chocolate was never my favorite, and while it wasn’t bad, it wasn’t good, either, so brownies went to the wayside. As we got into berry season, I realized that angel food cake is a bit on the tart side and not overly sweet, so I made one to see how it would taste. I was pleasantly surprised to find that it tasted good, and moreso with berries and whipped cream.

This is another thing I make from a mix. I like the Betty Crocker Confetti Angel Food Cake mix. It’s the only one that comes with the sprinkles in the box. If you don’t have or can’t get one of these mixes, you can use the plain angel food and fold in a tablespoon of nonpareils to the mix before baking.

It’s perfect with fresh or frozen berries and whipped cream or whipped topping.

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Cisplatin – Week 6

August 23, 2018

I had my last dose of Cisplatin today. The 6th week of this awful stuff. It was reduced by 50% this time. The side effects were really getting to be too much, but both of the oncologists wanted me to do it rather than skip it, and I understand the whys of that, but doing a full dose was out of the question. The oncologist had been dosing it down by 20 or 25% each week as it was. I think it got dropped so much more also because I’d already had my last radiation treatment so this last one was to continue its work the same way the radiation does after its complete, too.

I’ve reached the point in the past 2 weeks where eating and drinking were really a challenge. Mostly because this chemo wreaked complete havoc on my digestive system again like AC chemo did. I lost my appetite and when I would try to drink fluids, my stomach would react like I was full. Then, to top it all off, Cisplatin makes everything taste awful. It was similar to AC and Taxol but worse. It’s both a salty and metallic kind of taste effect. Meat started tasting bad about week 2 or 3. I figured this was because there was iron in the meat and the platinum brought out some of that flavor and reacted with it. Then, about week 4 peanut butter went on the no-go list. Dunno what’s in it that reacted with the platinum, but it was bad.

What works? Lemony muffins, Raisin Bran, oatmeal, fruit, veggies, eggs, milk, most cheese, and just about anything with a more savory flavor. I found that most ethnic foods like Chinese, Japanese, Thai, Indian, Italian and Greek had that savory taste so they work pretty well. So garlic green beans, pad thai, pho, ramen, shrimp dishes, dishes with ginger, Greek salad, olives, marinara sauce, garlicky hummus, mushrooms, veggie/mushroom pizza, and a few others. Olives were delicious on both AC and Taxol, so it’s no surprise they’re still delicious on Cisplatin. Drink-wise, flavored waters, lemonades, Gatorade, milk and some teas were still good. Plain water was okay. It just tastes better with something in it.

My radiation oncologist told me to make sure I was getting enough protein so that my tissue can heal better. That’s hard to do when a lot of protein-rich foods are off the table. Like meats, spinach is high in iron which means that it and Cisplatin clash. In other dishes, it’s okay, but a spinach salad is out of the question. When so many foods are tough to tolerate because of the taste issues, it became necessary to start supplementing my diet with protein drinks. Thankfully, they don’t taste awful. Or at least no worse than they did before chemo.

As it got more difficult to get more than 2 quarts/liters of fluids in a day, I talked with the nurses about getting IV fluids to help keep me hydrated. I started getting IV fluids during week 4. It’s about a 1-2 hour infusion of plain saline. During chemo weeks, which includes my Herceptin and Perjeta infusions, I would get IV fluids twice a week. I’m hoping to be able to drink enough again 2 weeks from now that I won’t need to go in for fluids anymore.

Another fun side effect showed up again last week. It is the little pimple things that I got on my stomach and thighs during AC. I used clindamycin on them and they’re slowly going away.

As far as other side effects are concerned, the ones I’ll be tracking and noting are vision changes, food taste, neuropathy, chemo brain, energy levels, and the condition of my skin & nails.

I’m happy that I can look forward to feeling better in a few weeks again.

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